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just wanted to join the TN forum

6 REPLIES 6
Spudgirl
Member

Re: just wanted to join the TN forum

Thank you all so much!!
Lavender Lassie - I live in Belgium and I reckon my Onc told me it was triple neg because it was easier than trying to explain it a different way, when we speak a sort of Franglais together. Thanks for all the info, its very useful. I am actually wondering now if it is worth even trying to work. The paperwork needed to go off sick/return to work is ridiculous here, and if I am doing that every 3 weeks I might get RSI from all the filling out of forms )

I have been through Lucy's links and they were all very useful. I too looked at the sticky with the useful things for chemo, then I started looking at possible chemo side effects, then decided not to look anymore.
When I started Tamoxifen last time I got so worried because some people had bad side effects to that, but I hardly noticed any apart from the odd hot flush and foot cramps.
So I have decided I'll wait and see what side effects happen to me then search for help at that time. The Onc has already told me my hair will fall out between session 1 and 2, and I know that generally I will feel rubbish for a while each time, so think I'll just see what happens.

Horace - of course stupidly I did google triple neg, then decided no more of that! So I then only looked at this site and Macmillan for info on it. It seems it was relatively unknown several years back, but it seems things come on in leaps and bounds with breast cancer treatment and its very treatable ... its just they can't give us anything afterwards to prevent it returning.

Pauline - I have actually been reading your posts and you are very upbeat which I love. Thats just how I was last time and I want to be the same again. I know it won't be a walk in the park, but being miserable won't get me anywhere. (Lets see if I am still saying that in a couple of months )

So I am confident I'll get this one sorted, luckily it still seems to be a tiddler, will get proper detail after MRI on Monday. I just worry about it returning again ... but thats the same with everyone I expect.
xxx
Lavenderlassie
Member

Re: just wanted to join the TN forum

Thanks, Horace, I went backwards and forwards trying to say what you have just put so well!

Guest user
Not applicable

Re: just wanted to join the TN forum

Hi Spudgirl

There is an ongoing thread for ladies due to start chemo in April - we have named ourselves Awsome April Angels - you could be a possibility for April or May, either way please have a look and join in.

Like you, I am also TN and to be honest still trying to find out more about it. So far, all I think it means is that we cannot be treated with certain chemo drugs which target cancers which thrive on some hormones however, there are plenty other drugs available. There is also a higher chance of recurrance in the 1st 5 years but after that we join the main population in terms of outlook.

hope this helps and do have a look at the April Angel's thread

all the best, Pauline x
horace
Member

Re: just wanted to join the TN forum

May I just say dont Google triple neg 🙂
Most of the information is out of date.
There are two main positives about tnbc.First it is usually very susceptible to chemo, especially taxotere. Secondly,if you are still recurrence free 8 years after a tn dx you are considered 'cured' which is never the case with positive bc.
It is a rather aggressive cancer but these days it can be dealt with.

Lavenderlassie
Member

Re: just wanted to join the TN forum

Hi Spudgirl,
Interesting that your oncologist has talked about Triple Neg, neither my oncologist or breast surgeon wanted to acknowledge the fact. They just said it is good not to need herceptin or hormone therapies. Great news about your scans being negative.
Lucy's advice re special links is where to start. I remember ploughing through the Top Tips for Chemo thread before chemo, with a shopping list getting longer and longer, and eventually finding a post saying "Nonsense, no one needs all of this".
True, so don't go out and buy it all but make a list of what info sounds good for you.
As well as the big thread, there are threads every month about chemo, so you can join in and know there are other people going through similar at the same time. This months is "Spring into chemo in March"- you'll find the April or May one in Latest Posts when you need it.
I never tried false eyelashes, but did go for a session of Look Good feel better at a local hospital, and in my fabulous goodie bag got a brilliant eye pencil for the vanishing eyebrows. And in the general chat, the most comforting advice re hair from another woman who had just lost hers. The lashes and brows come back quite quickly when you are done, in my experience and by most people's accounts.
http://www.lookgoodfeelbetter.co.uk/site/index.cfm
Work during chemo seems very variable, have seen it advised against for people working in an environment where frequent infections would be a risk, such as nurseries or schools. There are definitely people who are able to fit it all in, wasn't a choice I had to make, as I'm retired. Also different people experience different degrees of side effects, take advice as you go along, perhaps?
Best wishes
Lavender
xx

Lucy_BCC
Member

Re: just wanted to join the TN forum

Hi Spudgirl

I am sorry to read that you have had a new diagnosis. Firstly, you are welcome to call our helpline to talk through any concerns you have (0808 800 6000 9-5 weekdays and 10-2 Sat), they can also talk to you about other BCC support services such as our 'Live chat' and 'One to one' support service whereby you can be put in touch with others with similar diagnoses via telephone or email, you can also read more about these here:

http://www.breastcancercare.org.uk/breast-cancer-services/someone-talk

You may also find some of the information on our 'Treatments for breast cancer' web page helpful too as you can read about chemo and hair loss, we run a 'Headstrong' service to help you through this and there is information about this service too:

http://www.breastcancercare.org.uk/treatment?utm_source=Homepage&%3Butm_medium=help_you&%3Butm_campaign=treatment

Our forum users started a thread a while ago called 'Top tips for chemo' which you may find useful, here's the link:

http://www.breastcancercare.org.uk/community/forums/top-tips-help-get-you-through-chemotherapy?page=18#comment-2083728

I am sure your fellow users will be along soon with more ideas and support

Take care

Lucy

Spudgirl
Member

just wanted to join the TN forum

Hi all,
just wanted to say hello.

i had Dcis 3 years ago, had WLE, rads and Tamoxifen.

daignosed with new bc in other breast about a week ago. Went to see Oncologist on Thursday and he told me i have triple neg ( his words)

my bone scan and abdominal scan and chest xrays came back clear for mets which is a relief. having MRI on25th then see surgeon 28th to discuss op.

Onc told me i will probably have lumpectomy, but depends on MRI, then 6 chemo, one every 3 weeks, then rads.

i have a million things going on in my head - vanity stuff like where to buy nice hats etc, and if i can wear false eyelashes, then stuff like will I be able to work during chemo, what do i need to know about chemo.

I got abit scared reading some of the threads on this forum. The way the Onc explained it i would be fine after all the treatment, but now i am wondering if thats the case. i know there is a chance of recurrence/ new one, but other than that i am hoping it is very treatable?

I just don't know where to start as there is so much info on the website. Any ideas what info or threads to start with.
thanks
xx